A question I almost hate to ask...

[heliotrope]

My neuro abruptly pulled me off my DMD at my last visit. The explanation given was that it wasn't causing a noticeable difference in my symptoms. He replaced it with a low (under 50 mg) dose of steroids once a week.
His only explanation was that his primary concern was symptom management. He sidesteps direct questions about disease progression. I keep feeling like there's more at play here. Any ideas?

[JerryD]

It seems to me that you aren't afraid to ask the hard questions. You should make it a point to get the neurologist to answer your questions. And if the answers are 'fuzzy' , get clarification. You deserve that much . Good luck

[palmtree]

This doesn't sound like a doctor who is very knowledgable about MS. I hope you can consult another neurologist. DMDs aren't expected to create an improvement of symptoms. They are supposed to slow progression.

Unless you are primary progressive or an advanced stage if secondary progressive, there are treatments that are usually given to attempt to slow progression.

[rdmc]

My neuro abruptly pulled me off my DMD at my last visit. The explanation given was that it wasn't causing a noticeable difference in my symptoms. He replaced it with a low (under 50 mg) dose of steroids once a week.
His only explanation was that his primary concern was symptom management. He sidesteps direct questions about disease progression. I keep feeling like there's more at play here. Any ideas?

We (my neuro and I) decided to stop DMDs. But it was an open and honest discussion about my situation, disease progression, relapse rate, etc. I didn't have to wonder why I was taken off my DMD.

Have you tried asking him straight out if he's changing med strategies because he feels you've moved to SPMS? Are you still experiencing relapses? I'd want some explanation for his new med protocol.

Hope you get some answers.

[22cyclist]

I agree with the previous poster. My doc told me straight out that I had moved into SPMS although she did not take me off of a DMT. She is a researcher so she doesn't give up easily. She researches PPMS/SPMS.

Just go ahead and ask and then either way ask if you can try something like Tysabri that has been shown effective in both.

Good luck
Lisa

[Mamabug]

I also agree with previous posters. Unless you have progressed into SPMS, being on a DMD is likely in your best interests.

As far as I know, steroids will not help with symptom management unless you are currently in an MS flare. And 50mg is not a terribly low dose. At one point, I was on 40mg per day for about six months, and I still had some of the major side effects of steroids, such as moon face, increased appetite, big weight gain and acid reflux. Most doctors would have concerns, I would think, about the safety of remaining on that kind of dose long-term.

[tortis]

Tysabri

I have to agree with Lisa. I just saw a M.S. specialist and he agreed with my neurologist and they both thought I should go on Tysabri unless my index comes back to high.
Pretty much all the reply's were right on. Like Jerry said make him give you straight answers, he works for you not the other way around.

PEACE

Tortis

[Seasha]

It seems to me that you aren't afraid to ask the hard questions. You should make it a point to get the neurologist to answer your questions. And if the answers are 'fuzzy' , get clarification. You deserve that much . Good luck

Yes to this^ Always demand clarification!

[mjan]

I think you have been given good advice. I am sorry you are in such a bind.
My only question about your neuro is that he doesn't seem to be a MS Specialist.

Not sure if there is a certification for becoming MS specialist but most have a MS based patient load.

ASK! It is YOUR life!

Good luck, and let us know how you are doing ok?

Warmly, Jan

[heliotrope]

Thank you everyone

In response to everyone's question - yes, my neuro is an MS specialist. According to him, my MS is "atypical," so there is a significant amount of argument between specialists about my treatment. Unfortunately, asking for a straightforward answer doesn't mean you get one

[Waydwnsouth1]

I too have taken off DMD's, but that was because nothing worked for me. My Neuro and I talked about the possibility that I have moved to SPMS but I did not bring that up in my visit last week. I will do that in my next appointment in 4 months.

I believe you should be persistent on an answer from your Neuro. It seems a bit odd they he/she would just pull you a DMD and not give a reason or let you know the thinking behind it. If you don't get satisfaction perhaps you should try another Neuro. I this for certain, I would want an answer!

[Kimba22]

In response to everyone's question - yes, my neuro is an MS specialist. According to him, my MS is "atypical," so there is a significant amount of argument between specialists about my treatment. Unfortunately, asking for a straightforward answer doesn't mean you get one

Hi heliotrope,

You should expect no less but a straightfoward answer to your questions, by any physician who ever treats you, specialist or not. You deserve that! Instead it sounds like your neurologist doesn't value you as a person or patient with his flippant attitude.

Atypical or not, you have MS, which is a progressive disease. Which makes me question what he means by "significant argument among specialists?" And MS Specialist or not, this is your body and you are the one who must deal with the ramifications of treatment (or the lack thereof) for the rest of your life. Please don't accept a treatment plan from any doctor without further clarification, especially if it doesn't agree with information from reputable sources.

I'd also be curious to know if he officially reclassified you as Secondary Progressive? That would give your insurance company reason to deny coverage of your DMT.

Chronic daily corticosteroids are not recommended for MS. http://www.nationalmssociety.org/Nat...p_Steroids.pdf. Low dose (often very low dose) steroids are sometimes prescribed as a "feel good" drug. They can help reduce unpleasant symptoms in the short term, but the dose is too small to do much of anything else in MS. All the while, the body accumulates the long-term damage of steroids, putting you at higher risk of developing serious health problems like hypertension, peptic ulcer disease, diabetes, cataracts, glaucoma, and bone loss.

I'm not sure what "symptoms" your neurologist is trying to treat, but these are accepted treatments for MS:

http://www.nationalmssociety.org/Treating-MS

http://www.nationalmssociety.org/For...tom-Management

IMO, it's time to look for another neurologist.

Best of luck to you. ,